Health

The family fighting cannabis prohibition to keep their kid alive

With the use of medical cannabis, 7-year-old Jagger Cotte has lived nearly twice as long as doctors predicted he would. Now, his family is suing Jeff Sessions to remove cannabis from the Controlled Substances Act.

Jagger Cotte was only a year old when he was sent home on hospice. He’d been at the hospital for more than three weeks with mysterious, severe stomach pain so when he finally received a diagnosis, his parents were simultaneously relieved and devastated. “It felt like the twilight zone, like a bad dream. We were in shock, we knew he was sick, but he didn’t look like he was dying,” recalls Sebastien Cotte, Jagger’s father. “All of a sudden, your whole life changes. You go from having a regular family to having medical equipment all over your house, having nurses coming a couple times a week. Your life turns upside down.”

Nobody believed Jagger would still be alive by now. At seven years old, he’s lived nearly twice as long as doctors predicted he would. Children like Jagger who suffer from Leigh’s Disease—a neurological disorder that causes respiratory failure, muscle paralysis, and reduced mental function—rarely make it past the age of four. Cannabis oil, Jagger’s parents say, has been the key to their son’s progress. But they can’t legally access it at home in Georgia so they, like other parents to sick children across America, not only spend their days caretaking but relentlessly fighting the legislature to change state law.

“Everything you dream of when you have a kid, all that stuff in minutes gets thrown out the window,” Sebastien says. “Right now we’re just lucky he’s still alive.”

Photo by Kevin Garrett

Jagger’s parents had had plans to travel the world with their newborn. They wanted to go first to Hawaii, where they were married, and then, when he got a bit older, teach him their native languages of French and German (Sebastien is from Grenoble and his wife Annett is from Berlin).

“We had all these plans, but he’ll probably never speak or understand a word of what we’re saying,” Sebastien says. Jagger has the comprehension of a three to four-month-old baby and must eat strictly from a feeding tube.

And like an infant, Jagger doesn’t sleep through the night. Both his parents work mostly from home so they can watch their son: Annett is a health scientist who goes into an office once a week, and Sebastien sells construction equipment. Jagger sleeps in their bed so that if he coughs and chokes in the middle of the night, they can immediately apply suction to his mouth to save him. Jagger’s eating schedule is as erratic as his sleep so Sebastien only gets three and a half to five hours of rest every night. “Our life is crazy, there’s always somebody up and our house looks like a hospital,” Sebastien says.

Since Jagger’s diagnosis, doctors had him on a cocktail of nearly a dozen medications, including strong opiates like oxycodone, methadone, and morphine to mitigate his pain. Even so, he suffered up to a dozen seizures a day and would get frequent cramping causing him to cry out uncontrollably for hours.

Photo by Kevin Garrett

Then one day in 2013, Sebastien was watching TV when he serendipitously caught an airing of Weed, Dr. Sanjay Gupta’s CNN documentary about Charlotte Figi, whose parents discovered that CBD oil quelled nearly all her daily epileptic seizures.

“Jagger was coming up on his fourth birthday and he wasn’t doing well. We didn’t know how much longer he’d be here with us,” Cotte says. Cotte, desperate, flew out to Colorado to talk to as many people as he could about treating Jagger with medical marijuana. He talked to doctors, researchers, cannabis growers, and dispensary owners. Within a few days, he concluded that him and his wife, Annett, needed to move their lives across the country.

“We were out of options pretty much, everything we could do for him in Georgia, we’d done,” Sebastien says. “We were running against the clock.”

Photo by Kevin Garrett

Jagger was in such bad shape that his doctors wouldn’t allow him to fly to Colorado so the Cottes had to drive from Atlanta instead. At the time, Jagger was getting progressively worse. “He would scream anywhere from five minutes to two hours and there was nothing you could do,” Sebastien says. Not even large doses of morphine could alleviate his pain.

On the drive to Colorado, which Sebastien describes as “the worst experience of his life,” they had to stop every three to four hours to refill Jagger’s oxygen tank. Jagger’s doctors had told his parents they weren’t even sure if their son would survive the trip.

After six days on the road, they finally arrived in Denver as “medical cannabis refugees.” Almost immediately, they knew they had made the right decision. Within a few days of getting Jagger on a cannabis tincture regime, his seizures dropped from 10 or 12 to fewer than three or four per day; his pain decreased so significantly, he went off oxycodone altogether and his morphine intake went down by 90 percent.

Photo by Kevin Garrett

“Right away we saw improvement. He was looking at us better, was more aware, and smiling more,” Sebastien says. “We hadn’t seen him smile in years, so it was really nice to get his smile back. Even if nothing else happened, that was worth it.”

The only thing which didn’t improve was Jagger’s breathing, which was getting dangerously worse at the high altitude in Colorado. So after 13 months in the promised land of medical cannabis, the Cottes had no choice but to return home to Georgia, where Jagger could breathe more easily. And Sebastien, like other parents in conservative states, was forced to start breaking the law.

Six months prior to the Cottes’ return, Georgia Governor Nathan Deal signed Haleigh’s Hope Act, medical marijuana legislation allowing patients to possess (but not to legally access) cannabis. Inspired by now eight-year-old Haleigh Cox, who used cannabis oil to alleviate her violent epileptic seizures, the bill legalized cannabis oil with less than five percent THC for a limited number of qualifying patients. While it sanctioned possession of medical marijuana, the bill did nothing to create a commercial system whereby anyone could buy or manufacture it. This means it’s legal for some people to have medical marijuana in Georgia, but there’s no legal way to access it—putting patients, their parents, or caregivers at risk of breaking the law to get what they need from dealers or by sneaking it over the border.

“Every time I go to Colorado, I could get arrested on my way home,” says Sebastien. “It’s a struggle, a daily worry.”

The only alternative is to get cannabis oil from Georgia House Representative Allen Peake. Yes, that’s right. A legislator thinks the state’s medical marijuana program makes so little sense he has taken the risk upon himself to give out cannabis oil for free to patients who need it. The waiting list to get the cannabis oil from Peake is about two months, according to Sebastien, and there are about 3,000 patients on the registry. How Peake obtains the cannabis oil himself remains a mystery.

While generous, Peake’s solution is hardly sustainable. What Georgia needs, say the parents who have teamed up with Peake, is a legislative fix. They’ve now been pushing for one for more than two years and they’re hoping to finally see some movement before Georgia’s current legislative session ends on March 29.

“This journey for me started four years ago when I met a little girl, Haleigh Cox, suffering from 100 to 200 seizures a day. Her mom sent an email saying, ‘Please help save my family,’” Peake says. “It hit me with the one question we all have to ask: ‘What would I do if this were my child?’ That’s what set the wheels in motion for me.” The cannabis oil he gives away is from a reputable manufacturer so already ill patients need not worry what’s in their medicine—an otherwise massive issue on the black market.

To even get Georgia’s limited possession law passed took an enormous lobbying effort by families, Peake details. “So here I am on the forefront of a law that allows them to possess medical cannabis, but also on the forefront of a law that doesn’t allow them to access it,” he says.

Photo by Kevin Garrett

Now, in the 2018 legislative session, lawmakers are facing two options to expand the program. One is a bill to present a constitutional amendment on the ballot, asking voters if the state should allow patients to grow their own medical marijuana. The other is a bill that would provide licensing for two vertically integrated medical marijuana producers/retailers throughout the entire state.

“Twenty-nine states have dispensary type programs, but the deep south is where there’s a real hesitancy to move forward on this issue because there’s still this reefer madness mindset,” says Peake. “We are slowly, but surely showing folks that everybody has a grandmother who has Alzheimer’s, a cousin who has Crohn’s, or a sister who’s suffering from breast cancer. The more these average, everyday citizens are saying they want access to medical cannabis as treatment, the more it becomes understood that there’s serious medicinal value.”

Jagger is only one of thousands of children in the same predicament. And Georgia’s medical marijuana law, while limited, is far from the country’s most restrictive. In Texas, for instance, medical cannabis is only legal for patients with intractable epilepsy, and must contain no more than .5 percent THC. Not only does this exclude patients who would otherwise benefit from cannabis, but it also doesn’t allow for enough THC to effectively treat some of the patients who are allowed to use it.

Photo by Kevin Garrett

A coalition of parents with the Texas-based organization MAMMA (Mothers Advocating Medical Marijuana for Autism) is fighting to add autism to the list of qualifying conditions in Texas and in other states. Like most grassroots activism nowadays, MAMMA began simply as a Facebook group and soon garnered attention from parents all over the country and the world.

MAMMA was successful in adding autism to the list of qualifying conditions in Minnesota, and has groups in states like Ohio and Arizona, as well. There continues to be a lack of substantial data on cannabis’ medical potential as its prohibition at the federal level makes it nearly impossible to research. Parents lobby legislators with the limited, promising science, but more importantly with personal, heartbreaking stories about cannabis as the thing that worked when nothing else did.

Thalia Michelle, MAMMA co-founder, said she thinks in part the MAMMA mothers have been effective at getting laws changed in states like Texas, when other groups have failed, because conservative legislators understand that they don’t have a hidden agenda. They simply want to help their children and they’ve realized changing the law is the only way to do that.

Photo by Kevin Garrett

A far cry from pioneering states like California, which legalized medical marijuana 22 years ago for anyone who could get a dubious doctor to write them a rec, conservative states are only now tepidly dipping their toes into cannabis policy reform. No longer are states passing blanket medical marijuana legalization, but the trend is to legislate every detail of the program piecemeal, from THC content to qualifying conditions and the number of licensees allowed. New York, Georgia, Texas, Illinois, New Jersey, Minnesota, et cetera—no one is doing it the California way, and for good reason. California is still reeling from decades of legal ambiguity that’s made it difficult for anyone to comply with state policy.

So now, groups like MAMMA and other parents are taking incremental, specified steps to expand state laws to accommodate their loved ones. And they’re careful not to ask for too much. “The reason MAMMA did so well in Texas is we separated from other groups that had anything to do with Tax and Regulate,” AmyLou Fawell, co-founder and executive director, explains. “We could look at our legislators who are thinking ‘Oh, I’ve had hippies coming in for 20 years telling me they need this marijuana because they don’t feel good, who want it recreational.’ We came in and said our end game is medical and that made a huge different in Texas for MAMMA and the movement here.”

Photo by Kevin Garrett

Parents like Sebastien and the mothers of MAMMA have been slowly making progress, but there’s now a new concern with Attorney General Jeff Sessions threatening a crackdown on state compliant canna-businesses. This sort of threat from the federal government only validates reefer madness in conservative states and has the potential to interfere with reform efforts. That’s why, these days, Sebastien is taking the battle for Jagger all the way to the source of prohibition.

Sebastien is suing the federal government on the grounds that cannabis prohibition is unconstitutional. (Jagger, along with another sick child named Alexis Bortell, is listed as one of the official plaintiffs in the high profile lawsuit.) The group’s attorney Michael Hiller calls it a “civil rights case” focusing on the right to use life-saving medication to preserve life and health. And for Jagger, that’s exactly what cannabis oil has done.

Photo by Kevin Garrett

Sebastien describes Jagger as a “homebody,” saying he doesn’t usually like to go out because it requires so much equipment. But Jagger does have good days, where he’s feeling calm and affectionate. He’ll wake up, smiling, and just want to stay in bed for a couple hours to cuddle with his parents. Though he doesn’t respond to most things, he loves Mickey Mouse and the color red. He responds well to Frank Sinatra and oldies music too. It’s morning like these—with brief moments of joy—that make it all worthwhile for Jagger’s parents.

“I’m confident that cannabis gave us more time with Jagger,” says Sebastien. “He should honestly be dead by now, so it’s a blessing.”